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Still Good Work? Finding the Way to Balance and Community Building

August 12, 2010

There are so very many fractures in the online autism community that I often think it’s a wonder any of us can talk to anyone else! I can’t help but wonder if this is unique to this community because of, well, indelicate as it may be, the BAPpiness that is readily obvious in the parents of autistic children. 
        I own my BAPpiness, and I work very hard to not be overly literal, to try to see things from other people’s points of view, to let people be when I can, even if I don’t agree, as long as the point of view being forced on others isn’t dangerous. And even when I post on the angry place, I take pains to note when the folks there do something right. I try to see them as the multidimensional people they are. They don’t often post positive things at the angry place, and yesterday was a double heap of crap they should be ashamed of, but I’m just not going to dwell in that today.
      Instead I want to focus on folks who buy into some of the woo, but who I think also do some good work. Just two days ago, I wrote in my post, Late Night Ruminations, about some books I’ve been reading to review for Lisa Rudy’s About.com site. I wrote, in that late night post (slightly edited for this post), about Rodney Peete’s book (review can be found here): The Peetes are doing some good work. Their tremendous love for their children shines through, and Peete demonstrates on page after page that he gets the important stuff: the need to love and accept the child for who he is while you bust your ass to help that child reach his potential. That matters way more to me than the belief that their son is autistic because of vaccines. After all, Jay Gordon’s their pediatrician. I enjoyed reading Peete’s book and I think it’s worth the time, especially if you’re looking for a dad’s voice. It has practical tips, too (and I can say this while declaring I am not paid for these reviews, not even in scooby snacks; I am however provided with the book — in other words, I remain with no conflicts of interest to declare).
       Peete’s book adds another dimensionality, another layer to the community, to understanding where parents are coming from. It was well worth my time. If you’re looking for tips and are new to the autism world, it’s worth it for you, too. It’s worth it if you’re just looking to understand folks better, too, if you want a bit of the larger picture.
       Despite having my attention drawn to the fact that the Peetes will be front and center at woo fest every bit as robust as Autism One, I stand by my review of the book. Reviews of books, if one is being as fair as possible, should be about the words in the book itself, as if the potential reader has no other knowledge of the author. Reviews of books should be about the books, with as little possible bleed over of preconceived notions. If I’d known that the Peetes were going to be appearing at the National Autism Association convention in November with such, ummm, paragons as Wakefield, Olmsted, Blaxill, Bradstreet, and Soma(!), it would have colored my reading. I can’t deny that. 
       It’s such a frakking mess. That’s not grand company to keep, is it? Ick is my overriding feeling at seeing that line up. Really, it is a massive woo fest. So, what do you do? Do you dismiss, reject, cast out, refuse to work with folks who appear at overwhelmingly woo venues? Do you look specifically at what the individual is saying, what they are after, what they’re trying to sell?
      I don’t know. I think one has to look beyond the surface and refuse to make snap judgments.
      So, what non-woo is the conference having?
      Well, the first day there is a session on income taxes and disability and one on autism and marriage. Doesn’t sounds too woo-ey to me.
       There are sessions on sensory processing disorder and teaching nonverbal children to speak. Could be woo-ey, could not. 
       Of course, you’ve got Soma speaking. Woo. 
       Olmsted and Blaxill. Holy woo! 
       Bradstreet. Yup, more woo.
       Wakefield! Ding, ding, ding. Woo-winner
       Chantal Sicile-Kira. Hmmmm. Well, you be the judge. She’s a big fan of Soma and buys into what AoA sells. 
       On balance, this convention is focused towards biomed parents who choose to pursue all options regardless of the research or lack thereof.
       It’s not a convention I’d go to. It’s not one I’d want to go to. It’s one that’s sufficiently steeped in the woo that I’d question those who are speaking there. It bothers me that the Peetes are keynote speakers there.
      When I read this statement on the main page for the conference, I admit I rolled my eyes: “NAA is the leading autism membership organization for breaking through the myths of autism as a mysterious and incurable disorder. Recognizing that the future of those with an autism diagnosis cannot rely on raising awareness alone, we are committed to empowering parents and caregivers with the most up-to-date resources available to enable all affected individuals to reach their full potential.”
       NAA promotes actively lots of myths regarding autism, so I don’t buy this declaration. But, I have to repeat, the whole conference doesn’t appear to be woo. There may be valuable and reality-based information that the parents attending might not get elsewhere, and the NAA isn’t excessively gouging them on the conference fee (I’ve seen the Michelle Garcia Winner charge a lot more for her sessions than the NAA is charging for the full conference for two people to attend). On the balance, though, it will send vulnerable parents into woo, and it will line the pockets of woo-sellers.
       So, what do the Peetes get  out of being speakers there? Are they aware of all the woo, do they actively buy into all of it, are they promoting it? Honestly, I don’t know.
      That the NAA’s sponsor on that conference page is a company pushing HBOT chambers? Well, geez, not good, is it?
       No, it’s not good at all. So, what do you do? How do you decide?  Do you boycott the Peetes’ books, their foundation out of principle? I guess everyone will make his or her own mind up on that.
       Here’s how I’m going to keep on working to build community. If your focus is on improving the lives of autistic individuals, being supportive and respectful of their individuality, if your focus is on being a positive support to other families, then I’m going to work with you, be friendly with you, and agree to disagree on things like vaccine-injury as a cause of autism. I am facebook friends with people who do facilitated communication, rpm, and others who do some woo that if I think on it, well, you know. As long as you aren’t pulling an AoA, pushing the woo, selling the woo, profiting on the woo, I don’t have a problem.
       And I’m gonna keep checking into outfits like NAA and other nonprofits to look at what they do with their money, who their sponsors are, what information they provide to the public and how accurate it is.
      But, and this is important, I believe, I’m gonna reserve judgment on folks who support the organizations. And here’s why. Most folks don’t go digging through tax forms to see how organizations spend their money. Most folks look at the outer shell, see that the organization has stated goals of being helpful, and they support the organization, volunteer for it, heck, even walk for it. They’re trying to help. They’re trying to make a difference, and they don’t deserve to be judged negatively for trying to do good, even if you aren’t thrilled with the actual organization.
      So, I’m not thrilled with Autism Speaks on a lot of things. I don’t like what they do with most of their money. I think it’s obscene for someone to make more than half a million dollars a year from a nonprofit organization. So, I judge the organization and the person taking the bucks. I don’t judge the person donating. Even if they know. Why? Because in a lot of communities, the only thing going autism-wise is the Walk. The only thing going.
      We need to work in our local communities to give folks other options, but until we’ve got that, we’re going to have to be pragmatic and work within the structures and organizations that already exist.
       We can stick to tightly described principles and accomplish nothing, connect with no one, because no one is going to see the world in the exact same way we do. Or we can branch out and focus on big goals like building a supportive, respectful community and let some things go, or at least not be directly adversarial while we’re working on common goals. And maybe by working on those common goals we’ll find a way to bridge divides, respect each other, and care, care enough to find a way to talk about the differences calmly.

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